Friday, May 2, 2014

I was 9-years-old and struggling to breathe, as my little body was being squeezed mercilessly by my older brother. He had me in a classic scissor hold, trapped between his legs, gasping for air. As if this wasn’t humiliating enough, my loving brother topped it off by grabbing my own hand and forcing me to hit myself in the face.

“Quit hitting yourself!”, he would yell over and over, as I whimpered in defeat.

Always defeat…

I never would have guessed that decades later, I would be saying this to my 9-year-old daughter… (just not for the same reason.) She can’t hear me or understand my words, but it doesn’t stop me from pleading with her, “Quit hitting yourself, Elise!”

Of all the issues that Elise deals with on a daily basis, the fact that she hurts herself in a variety of ways has to be her most devastating challenge. We can deal with deaf. We can handle blind. We cope with her cerebral palsy, and muddle through her daily seizures. What I can’t seem to wrap my head around, though, is her self-injurious behavior (SIB).

This post is for any other parent or caregiver out there who helplessly watch as their child hurts themselves, while trying your best to protect them. This will at least show you that you’re not alone, even though I definitely feel that way most of the time. Trying to make any amount of sense out of your child’s SIB can be incredibly frustrating, as it seems like a puzzle never to be put together.

Hopefully, in our story, you can find some solutions helpful hints. I only ask that if you have ANYTHING to add that could be helpful to this struggle, please comment below. I am always desperately seeking new ways to deal with this insidious condition. This is the part of Elise that I understand the least about, which results in a string of failed attempts to control her everyday struggle.

*** It is extremely difficult for me to post these kinds of pictures of Elise on my blog, but it is a very real and true depiction of life with a child with severe brain injury. Not all suffer with this type of behavior, but countless children/adults do. I don’t post pictures of her in this way, because who needs to see my baby girl with blood on her face and hands, or a black eye on her innocent face? But, since that is what this post is all about, I had to bite the bullet and reveal the “not so pretty” side to life with Elise. ***

This is Elise’s situation, what I know about SIB, and what we have tried...

Chin Hitting

Elise started hitting herself when she was about 3-years-old. One day, out of the blue… BAM! She aimed the heel of her right hand directly onto the right side of her chin. “That was odd,” I commented at the time.

Fast forward many years later, and it ain’t so odd anymore!

You gotta love the action shot! When it comes to hitting herself, the harder it is, the better.

Another good action shot… You can see Elise doing this any day of her life. Some times are worse than others.

It doesn’t look like a very strong or violent hit, but trust me, it is…

Head/Face Hitting

This is, by far, Elise’s SIB of choice! Shortly after her first experiments with hitting herself on the chin, she quickly progressed to hitting herself in the right temple. This is a pretty safe target, as is the jaw. These two areas, though, have sustained so much hitting over so many years that the tissues have changed in her facial structure, resulting in an unbalanced/non-symmetric face if observed closely. Her chin remains larger on one side, and her temple protrudes on one side, as if a permanent knot has formed under her skin. (She has been thoroughly checked out by doctors, and we have been assured that, other than the facial areas changing shape/contour, nothing is broken or fractured… at least not yet.)

Hitting her head/temple in bed...

Could she stop there? Noooooo… she eventually moved on to banging on her sweet nose, pretty mouth, and baby blue eyes. Putting these areas of her face under this amount of abuse has proven much more damaging.

She has knocked out several of her baby teeth, given herself black eyes, split her lip countless times, and scratched her face in many places.

It started innocently enough with minor red marks and small bruises on her face.

But, in time, she has honed her skills as a self-boxer, resulting in more obvious injuries!

It doesn't take long at all for her to inflict this upon herself, and many times we aren't even aware. She cries most of the time, so we can catch her and stop her. She is beginning, though, to wake up at night and hit herself in silence, giving me a big surprise in the morning!

There’s nothing as jarring as going into Elise’s room in the morning to get her ready for the day, and discover that, during the night, she had silently beaten herself up. The same actions that can result in her screaming in pain and irritation, can also serve as self-calming behaviors. This fact creates many problems from our point of view as her parents. It underlines, italicizes, and boldly screams, "I need something/feel something, but I can't tell you!"

No matter how many times she beats herself up like this, it is still shocking to see her go from the picture on the left to the picture on the right in a matter of minutes.

Biting Herself

Did she stop at hitting herself on the head/face? Heck no...on to BITING herself!

Many children with Elise’s level of brain injury keep their hands in and around their mouths most of the time. This provides them comfort, serves as a stimulation, and satisfies a primal need, not unlike that of small babies. As babies grow out of this behavior, lots of kiddos with brain injury just keep on at it, year after year. I’m glad she has her hands to occupy her when she isn’t getting attention from others. Unfortunately, it doesn’t stop at that. When Elise is having a bad time with her SIB, she will bite her hands until they bleed. For years she kept the biting shallow enough that it provided her with what she was going for without actually hurting herself. One day she decided, “Hmmm, maybe I’ll put a bit more force into this! If a little is good, why not a lot?” The result is bloody hands covered with cuts and callouses.

This is a good combo picture. Face and hands...

Head Banging

One of Elise's more startling behaviors to the outside world is her head banging. This started when she was very young, maybe around 2-years-old. While on her back, she will pull up her head, (yay for the head control!), and slam it back down on the floor. She doesn’t do this in a bed where the mattress underneath her is soft, but she saves it for the hard surfaces. I remember thinking she was so clever when she was just a little thing, and when put on a changing table, she would recognize that the surface was hard. She would rear her head up and bang it back down on the table as hard as she could. I know with all of my heart that if you were to put Elise on a hard wood or tile floor and leave her there for any long period of time, she would beat her head until she passed out or died from trauma. She doesn’t have that “OFF” switch that tells most people, “I should stop, this really hurts!”

Banging her head has also proved detrimental to her wheelchairs. She hit the headrest of her first wheelchair so forcefully and so often that the metal just snapped! Her wheelchairs now come with stronger headrests, though my husband has to tighten them often because they are no match for her little head!

Hair Pulling

The last main form of SIB that Elise deals with happens to be the least damaging. The girl loves to pull her hair. This is mainly done when she is tired, and not in the way a baby or toddler twirls or tugs on their hair as a bedtime ritual kind of thing. She puts all of her strength into it! This is a behavior that we do not interfere with. She has yet to actually pull her hair out, so if she needs to do this to calm down and sleep, go for it! (Just crossing my fingers she keeps it at this level… I don’t need to add hair loss to what we’re dealing with here!)

What We Have Tried

These are a few of the things we have tried over the years. Some work, some don't. You'll never know until you try!

Homemade Boxing Glove

Yes, that is a big, pink boxing glove (made out of foam and socks.) It worked ok, but would quickly become soaked with her spit, making it a pretty gross option. It was also cumbersome and hard to keep on her hand. We moved on...

Arm braces/Elbow Immobilizers/No-Nos

When she was smaller, we had the most luck with this knee immobilizer. Yes, these braces can be used in all kinds of ways! It fit her arm perfectly, and kept her arm from bending up to hit her face. She did figure out how to throw her braced arm in the air and against her head for a little fun, but no harm ever came of that.

Arm and leg braces are used often to keep these kids from using their arms/hands to hurt themselves, so they can serve a double purpose. We have always been given a pair here and there by our orthotics guy. These are actually knee immobilizers, but they work as well as ones for the elbow.

I mentioned these in my post about Cerebral Palsy (here). This was an arm brace we tried years ago, specifically for keeping her arms outstretched to work on loosening up her spasticity. We didn't really think this one through. Turns out, it hurts pretty bad when you hit your face with your hand/arm and get a face full of metal. Not the best design for a hitter!

Baseball gloves w/ fingers cut out

This was not her best look, let me tell you! We got the bright idea to get her some baseball gloves and cut the fingers out. We were trying to prevent her from chewing up her hands. These worked well, except for the spit mentioned above with the boxing gloves. They would become saturated, and then irritate her skin underneath. In a pinch, they are a good option, though...

To Medicate, or Not To Medicate...

I have seen the debates on internet blogs, forums, and FB. I am aware that many parents/caregivers try to do everything possible before trying medication. I get that. Elise is on so much medication just to function daily, that when I drive up to the pharmacy window, they just go get her prescription. No conversing necessary! We also give them a Christmas gift each year :)

The thing is, that "no medication" ship sailed a LONG time ago for Elise, and if there is something out there that gives her some relief, I'm gonna get it for her. Our medication of choice for her SIB has been Risperidol (Risperidone.) This cuts her hitting/biting in half. She still does it a lot, but not nearly as much as when off of the medication. I don't think any prescription will completely stop her behavior, but we are thankful for how much it does actually help. It took us several medications, and even going back to ones that previously failed to help her, before getting the right drug + dosage to be helpful to Elise's SIB. Frustrating, yes... but DEFINITELY worth it!As Elise's parents, we have always worried about what the medications ultimately do to Elise as a person. Over the last several years, as her medications and doses have increased due to escalating SIB as well as uncontrollable seizures, we have definitely noted the sad fact that Elise's personality has taken a hit. The twinkle in her eyes has faded to a point. This is a definite situation where you have to weigh the pros and cons. Is it worth getting back some of that *twinkle* in her eyes, if she is determined to knock them black and blue? Regaining some of that younger personality she had would be great, but could it really show through if she couldn't stop screaming, biting her hands, and splitting her lip open? It's a trade-off... one of many heart-breaking, but necessary decisions that we have made for her with her best interest in mind.

My LEAST favorite, but MOST used option... Personal Intervention

This is what we do most of the time to help Elise out with her SIB. It is also the most exhausting and time-consuming option. Oh, and it looks bad in public.

Personal intervention, for us, means replacing the action that Elise is doing to herself with something with just enough power behind it to satisfy her without hurting her. If she wants to start banging away on her temple, jaw, face, or head, we will just take the place of her hand with ours. I know just how hard to "hit/tap/pat" her in the head/temple to appease her, but without harming her. I promise... she likes it!

For example, when I leave the table at Chilies to go to the bathroom, I tell my mom or husband, "Can you hit Elise for me?" Chances are, I've been "hitting" her with my hand to her head throughout the entire meal just to keep her from doing it much harder to herself, crying, and causing a scene. (Every time I write about us being in public somewhere, I have us sitting at Chili's. I'm not sure why... we go other places :)

A few weeks ago, I asked a friend at church to hit Elise on the head while I had to step out of the room. I overestimated our friendship, I think, as he looked at me like I was nuts. His wife, however, was more comfortable with my request. She knows just how hard to "pat" Elise to keep her happy. (Thanks for nothing, John Bregere!)

This is a fine line.

I, as her mother, the rest of her family, close friends and teachers know just how much muscle to put into this action. Elise does not enjoy being patted or touched in a light, easy way. Kids like her often prefer touch to be heavy, forceful and even jarring.

My point is, this may look like some sort of abuse or negative action when seen from the outside by people who know nothing about Elise. I had to quit caring what people thought. I figure, if they can see the result is a relaxed, happy little girl, hopefully they won't have the urge to call CPS!

Other Forms of Stimulation

One last way that we try and curb Elise's SIB, is by giving her plenty to occupy herself. This is a huge challenge when dealing with a deaf/blind child that can't use her body to play like typical kids do. Most of what Elise enjoys includes vibration. Her toys vibrate, she's had a vibrating toothbrush, and her bed even vibrates! This makes sense for someone lacking so many senses. She can "feel" her world better this way.

The following has been a very useful product for us.
(Ok, so, before I go any further, I want to let you know that I've heard all of the jokes there are about this product. I've even told a few. So, just take a moment to clear your mind of any silly thoughts and let's get on with it!)

This is something that we can put in her chair with her, wrap around the bottom of her standing frame (to help with circulation), put on her mat with her, or just give her to provide some much needed input. If your child knows how to work switches, or likes switches, you can buy the one that is switch activated. This gives them the ability to control when the snake is on and when it is off.

Pretty cool...

Boredom is Elise's biggest enemy. It also brings out her SIB like crazy! At home and at school, she is played with, worked with, given opportunities to be in different environments, and to play and work with a variety of toys and switches. She has something to occupy her for many hours each day. This is a sure-fire way to keep the SIB away. She LOVES attention, and will hog any that comes her way! We also provide Elise with plenty of personal, hands-on, "in her face" time. This is HER favorite solution to controlling her SIB! Most times that she is given up-close and personal treatment, she stops the hitting, biting, and hurting of herself to just enjoy being the center of someone's attention.

“Why is she hurting herself?”

Four months ago, she screamed and hit herself in the face, until we discovered she had esophagitis, resulting in years of unaware damage being done to her esophagus that she couldn’t communicate to us.

Last month, she hit her head repeatedly because she had an undetected ear infection.

Two weeks ago, she gave herself a black eye and a split lip on the bus just for the heck of it (probably just bored).

Yesterday, she bit her hands as she screamed in delight while I played with her.

Today, she has hitten, bitten, screamed, and all together thrown fits for a reason I may not figure out.

These behaviors go against all that we, as typical, non-brain injured people know and understand. Although we are continuously perplexed by this question of why, I personally believe that there are 2 main reasons as this pertains to Elise:

#1:She is sick/hurting/uncomfortable in some way.This is extremely hard to figure out, and I have thousands of dollars of doctor bills to prove it! The culprit can be as big as an unnoticed but painful infection, or as small as a stuffy nose. I also believe she is in discomfort much of the time due to the spasticity of her body, as I wrote about in the post about Cerebral Palsy mentioned above. She can also sense when she is about to have a seizure, and often hits herself extra hard in the seconds preceding it. This girl can feel the slightest change in her health, and this is how she deals with it. Unfortunately, hitting herself only creates more pain and discomfort. This is a cycle not to be understood by Elise, so if WE don't stop it, SHE would continue to hurt herself to no end. #2: Lack of outside stimulation. In short, she can't see what we see, hear what we hear, or use her body in the ways we do to create our own stimulation. Like twirling our hair, chewing gum, tapping our fingers on a desk, bouncing our leg/foot, and all of the other stuff we do daily to regulate ourselves.

There's Always a Brighter Side...

OK, so maybe there's not really a "brighter side" to this aspect of Elise's life, but I have a hard time ending on a note that isn't at least a little uplifting. How about this...

To make things fair after posting all of these pictures of Elise not looking her best, I will now put up a picture where her family looks like weirdos and she gets to look like the only normal one of the bunch! (Except for Poppi in the front... spoil sport!)